]]>http://deirdre.net/mom-update-shes-home-o/feed/45186Mom update 6/4http://deirdre.net/mom-update-64/
http://deirdre.net/mom-update-64/#commentsFri, 05 Jun 2015 00:22:18 +0000http://deirdre.net/?p=5166Mom’s finally moved out of the hospital into rehab, which is great. She’s there to build up strength so that they can do the hernia surgery safely. They will also have to remove her gall bladder, but that is less of a problem at this point. Unfortunately, they can’t do both at once (unless they […]

]]>Mom’s finally moved out of the hospital into rehab, which is great. She’s there to build up strength so that they can do the hernia surgery safely. They will also have to remove her gall bladder, but that is less of a problem at this point. Unfortunately, they can’t do both at once (unless they have to to save pt’s life), since the hernia needs a clean field, and the gallbladder’s considered a dirty surgery (meaning one with lots of chance for infection).

Our friend is house sitting and cat sitting, and since the cat loves him (and will actually show up when he calls), that’s a good thing.

We’re on a trip that mom was supposed to join us on, but obviously couldn’t. We’ll do something later that’s more of a “her” trip, since this was definitely a my thing trip. She probably won’t be cleared for travel for several months, though.

]]>http://deirdre.net/mom-update-64/feed/125166Mom Update 5/28http://deirdre.net/mom-update-528/
http://deirdre.net/mom-update-528/#commentsThu, 28 May 2015 22:00:10 +0000http://deirdre.net/?p=5157Mom’s moved to a room on a different floor, so she’s now out of the ICU. Also, Rick posted a comment yesterday that clarifies what she’s up to: I was over there yesterday and a couple of times today, and Deirdre’s been over there, too. Cheryl started physical therapy this afternoon. Predictably and as I […]

Mom’s moved to a room on a different floor, so she’s now out of the ICU.

Also, Rick posted a comment yesterday that clarifies what she’s up to:

I was over there yesterday and a couple of times today, and Deirdre’s been over there, too. Cheryl started physical therapy this afternoon. Predictably and as I warned her, it was tough sledding for her. I didn’t get a full account of what they had her do, but it seems to have included her at least standing up for a while if not walking a bit.

One of the nurses was by, as was a social worker, and both separately talked to me about Cheryl’s condition and possible next steps. The nurse seemed to suggest that it’ll probably be a couple of more weeks before Cheryl can be released to the outside skilled nursing facility (SNF). The social worker detailed four SNFs in the surrounding cities we’re likely to be able to choose among, so I got the names of all of those, so we can visit them. She also speculated that Cheryl may be cleared to be transferred to the regular hospital ward and out of the ICU within a few days. The nurse suggested that Cheryl might need to do some substantial amount of physical therapy before she is cleared for the needed hernia surgery, but this sounded a lot like speculation on his part, and really, as with much else, it’s up to the attending physician. Anyway, I do agree it’s sadly unlikely that we’re getting Cheryl home for quite a few more weeks, but the good news is that she is still getting steadily better.

In other good if belated news, Cheryl is now using a CPAP ( = continuous positive airway pressure) machine, borrowed from the hospital, when she sleeps, so that she isn’t continually woken out of REM sleep by brief cessations of breathing (as happens with a small percentage of people). I am told this extra-fancy CPAP machine is technicaly a BiPAP ( = bilevel positive airway pressure) machine, in which both breathing-in and breathing-out pressures are regulated. What I hear is that Cheryl had tried and disliked the regular machine she had at home, and had given up on it and given it to Deirdre after Deirdre had a sleep study concluded that she needed one. Apparently, Cheryl is now sold on (at least) the BiPAP, if not on CPAPs generally, as she now is reporting restful sleep that she’d been unable to get before. So, obviously, she’s really needed one all along.

About CPAPs

About 25 years ago, I dated a doctor for a while. One night we spent together, he said, “did you know you have sleep apnea?”

Finally, I’d gotten enough cash to get a sleep study, and the center had a couple months of backlog. My appointment was for the end of November.

My first husband died on November 15th, and the last I saw of him was on a ventilator. The sleep study? I just couldn’t. While a CPAP isn’t a ventilator, it was just too close, and I couldn’t handle it emotionally.

A couple of years later, my dad wound up getting a CPAP and would wax poetic about how much he liked it, but the mask over the mouth still freaked me out. Then I went to Clarion, and could not stay awake. The mental exhaustion on top of everything else was too much. At that time, I wished I’d gotten a CPAP, but obviously I couldn’t in the middle of Clarion.

Then my mom got a CPAP. Tried it. Hated it.

A few months later, our friend Ross mentioned his CPAP, saying he’d been most successful with a nasal interface (aka nasal pillows). That turns out to not hit the same emotional button for me as the mouth interface. I decided to try my mom’s CPAP out.

The first night? Slime city. I’d suffered from chronic sinus problems all my life, and it cleaned everything out. Even though I got very little actual sleep, I sure felt better the next day. The next two nights I also struggled with adapting, but I slept better both nights than I had in years.

Went to my doc, told the tale (including both parents having been diagnosed), and I was pushed to the front of Kaiser’s queue for an at-home sleep study. The resp doc was on vacation the day after I saw him, but he called me from vacation to let me know that I should go in to get a CPAP as soon as humanly possible.

I’ve been on a CPAP ever since, and I’m on my third machine. I no longer have chronic sinus problems. Though I never had serious acid reflux problems, those are also rarer and less severe than they were before the CPAP. (Though that is not universal; some have worse problems on CPAP.)

There have been exactly two downsides for me. First, I’m more prone to nosebleeds than I was before, though consistent use of Ayr Nasal Gel prevents that problem. Second, I have to plan when and where I sleep more. I can’t just catch a nap and expect to be well rested.

Which is a very long way of saying: I’m glad my mom is finally happy using a CPAP, though technically, they’ve put her on a BiPAP (which has different pressures for inhale/exhale). It took me a long time to get there, but I’m glad my mom’s finally on the same page.

Oh, and a weird thing? When we got tested initially, my father, mother, and I all had the exact same air pressure settings.

]]>http://deirdre.net/mom-update-528/feed/85157Mom Update: Off the Ventilatorhttp://deirdre.net/mom-update-off-the-ventilator/
http://deirdre.net/mom-update-off-the-ventilator/#commentsSat, 23 May 2015 07:24:44 +0000http://deirdre.net/?p=5150Two weeks and almost two days after the cascade failure, mom is off the ventilator and onto a cannula delivering extra oxygen is all that she’s got now. It was really nice hearing her speak after so long.

]]>http://deirdre.net/mom-update-off-the-ventilator/feed/125150Mom Update 5/18http://deirdre.net/mom-update-518/
http://deirdre.net/mom-update-518/#commentsTue, 19 May 2015 10:03:22 +0000http://deirdre.net/?p=5142She’s down to two IVs: food and pain meds. Still has some of the other meds injected, but they no longer need to be IVs, which is huge progress (she was on at least three heart meds, one of which was pretty toxic but super-critical). Physically, she was more alert and happily watching HGTV. After […]

She’s down to two IVs: food and pain meds. Still has some of the other meds injected, but they no longer need to be IVs, which is huge progress (she was on at least three heart meds, one of which was pretty toxic but super-critical).

Physically, she was more alert and happily watching HGTV. After several days where she wasn’t seeming to want to do anything, that’s the best news of all.

Tuesday, 5/19 Update

We had a good talk with the nurse.

She’s down to half the dosage she had yesterday on pain meds, so that’s good. I had quite the scare this morning when they tried to call and I accidentally hung up when I fumbled answering the phone.

Turns out they just needed to have firm consent on one item, and even though they have her okay, she’s on strong enough pain meds they can’t assure her consent while she’s on a ventilator.

After I thought about it, I realized it was probably almost always dicey to get consent when one’s in the ICU. Which begs the question: if you are alone and have no known next of kin, what the heck are they supposed to do? That’s a really interesting question.

Anyhow, mom’s had five hours on ventilator assist, so she was breathing on her own for five hours. So they’re rehabbing her, hoping to get her off the antibiotics in a day or two, and once she’s healed from this portion, then they’re going to look at getting her hernia repaired.

]]>http://deirdre.net/mom-update-518/feed/155142Things Are Looking Uphttp://deirdre.net/things-are-looking-up/
http://deirdre.net/things-are-looking-up/#commentsTue, 12 May 2015 09:45:18 +0000http://deirdre.net/?p=5099This a continuation of the medical saga that began here. Where we were as of a couple of hours ago: Mom’s still in the ICU, and probably will be for at least a couple of days more. They’ve been able to keep her stable without surgery, which is good because then she’ll be more likely […]

Mom’s still in the ICU, and probably will be for at least a couple of days more. They’ve been able to keep her stable without surgery, which is good because then she’ll be more likely to survive it.

She still needs surgery (and recovery from same) before she can come home—and will need it before they step her down out of the ICU. Otherwise it can happen all over again.

Most of her numbers are vastly improved. She’s able to write almost normal size now, so her motor control’s a lot better with the current medication regimen. One of the meds I’ve been on and it makes you shaky.

I’ll add updates to this post rather than to the comments.

How The Cat Is Holding Up

I started writing this post because I wanted to say something about how our cat Tanner is handling it. We got our cat at a local shelter five years ago. Tanner bonded to my mom as her Primary Person, and she’s been just distraught since mom’s gone. Obviously, we don’t smell like mom when we come home, because hospital mom doesn’t smell like Tanner expects.

One of Tanner’s quirks is that during any period of time (and I mean weeks or months), the cat will have only one “spot” in the house. Or no spots in the house. Sometimes that’s my ottoman, but usually it’s mom’s bed. The other thing is that the cat spends most of her time outdoors, even when it’s cold and wet. She doesn’t spend time indoors when we’re not around, typically.

Rick and I (and our friend Duncan) had just gotten home from the hospital and we were calling the cat to get her to come to the back door and come in. After quite a while of that, she decided to show up from inside the house—she’d been in mom’s room all along.

]]>http://deirdre.net/things-are-looking-up/feed/475099The Way Things Look from Here (Rather Bad)http://deirdre.net/the-way-things-look-from-here-rather-bad/
http://deirdre.net/the-way-things-look-from-here-rather-bad/#commentsThu, 07 May 2015 19:40:20 +0000http://deirdre.net/?p=5090First, for those of you who don’t know, my mom’s been in the hospital. The short version is that she’d had a gallstone, and that had caused diarrhea and vomiting, and she went to the ER a week ago Tuesday. They transferred her to a hospital room. A few days ago, it looked like she’d […]

]]>First, for those of you who don’t know, my mom’s been in the hospital. The short version is that she’d had a gallstone, and that had caused diarrhea and vomiting, and she went to the ER a week ago Tuesday.

They transferred her to a hospital room. A few days ago, it looked like she’d be getting out of the hospital, and they’d do the gallbladder surgery in a few weeks when everything had calmed down.

Then she took a turn for the worse three days ago. Not a huge turn, just a slight detour. She wasn’t getting out of the hospital after all. She’d seemed better the day before yesterday, per Rick, and then somewhat more fragile last night. Not hugely so, just somewhat.

One of the things she’s complained about over the last few days is pain from a hernia that has needed repair. That, as it turns out, has been a huge factor in the cascading crisis.

I got a call at 4 am from the hospital saying they had to transfer her to the ICU. She’d gone into atrial fibrillation, and they needed to stabilize her.

I got another call at 8:30 in the morning. They had her somewhat stabilized, but there was a bigger problem: the hernia’s completely blocked, preventing things draining normally through the gastrointestinal system.

Which means, of course, she vomited up the fluids, got a significant bunch in one lung, which is called aspiration pneumonia. So she’s on 100% oxygen to help with that.

As a complication of all this, she’s also got sepsis, and they need to go in there to fix the hernia.

Except that she’s got one of the classic side effects of atrial fibrillation (and everything else: low blood pressure. They had to put her on two meds to bring her blood pressure up to a workable range.

And anesthesia will lower it. (Okay, this is an oversimplification, but a) I’m not a specialist in this area, and b) I have had two hours of sleep, so that’s as complicated as I can be right now.)

They just get her heart rhythm back to normal with defibrillation (but defib increases risk of stroke), and they think they have her stable enough to do the emergency surgery.

There are also renal failure complications and she may need to be on dialysis, but they can’t do that now because dialysis also lowers the blood pressure.

It’s a big cascade failure and they are doing what they can, but it’s pretty touch and go right now. The heart rhythm improvement is the first positive sign we’ve had since she was admitted to the ICU.

Lessons Learned

My mom had been putting off the hernia repair surgery, and things wouldn’t have gone sideways this far if that had already been done. If you or someone you know have been putting hernia repair off, please show them this.

]]>3877Some Thoughts on the Missing Stair Analogyhttp://deirdre.net/some-thoughts-on-the-missing-stair-analogy/
http://deirdre.net/some-thoughts-on-the-missing-stair-analogy/#commentsTue, 24 Jun 2014 16:04:48 +0000http://deirdre.net/?p=3839I’ve been thinking a lot about the missing stair analogy of late. For those who don’t know it, it’s the concept that people learn how to warn other group members of a specific member’s vile behavior. After a while, because “everyone knows,” they become like a missing stair everyone knows to step over. Except everyone’s […]

I’ve been thinking a lot about the missing stair analogy of late. For those who don’t know it, it’s the concept that people learn how to warn other group members of a specific member’s vile behavior. After a while, because “everyone knows,” they become like a missing stair everyone knows to step over. Except everyone’s not an insider.

Growing up in a household with abuse is like that missing stair, except it’s the missing doorknob to go outside, the missing section of the floor between you and the monsters, and the missing stair (which leads to different monsters). You learn pretty quickly what escalates vs. what does not and how best to cope—which doesn’t mean that it’s all good by any stretch of the imagination.

When you get out into life, having routed around the doorknob-floor-and-stair problem all your life, you really don’t know how to deal with the fact that the world is full of people whose houses have fully-functional stairs, doorknobs, and floors. It had never occurred to you that floors should be actual floors. And they think you’re pretty strange for that odd jump you do five stairs below the landing.

Some of the problems out there—that poor bastard is missing a whole roof—are even worse.

Sometimes your coping strategies will get you into more trouble, especially when you interact with people you think get you but are broken in differently horrible ways.

I remember not long after leaving Scientology, I was dealing with all of these missing-stair-like problems unraveling at once. As I described it one day, I felt like I’d teleported suddenly into a different emotional landscape where I was blindfolded, everything was in an unfamiliar place, and all the furniture was pointy.

That shift was permanent, and it took some time to get used to, but I remember the imagery that went along with trying to describe it.

]]>http://deirdre.net/some-thoughts-on-the-missing-stair-analogy/feed/23839Origin of US Child Abuse Lawshttp://deirdre.net/origin-of-us-child-abuse-laws/
http://deirdre.net/origin-of-us-child-abuse-laws/#commentsThu, 19 Jun 2014 15:54:37 +0000http://deirdre.net/?p=3809My mother (Cheryl Morris, who’s commented on my blog before) used to be a social worker. Some of the stories she’s told me are horrifying. Yesterday morning she pointed out that, in the US, child welfare laws came out of the movements to prevent cruelty to animals, something she was surprised by when she became […]

In 1874 when the first case of child abuse was alleged, a horribly graphic case of a young girl beaten, it was the ASPCA that was called to advocate for the child. At the time, children were considered property and there were no laws against their abuse. However, there were animal-protection laws in place and the girl was successfully defended by using the animal protection law, since, her attorney argued, she was an animal. Subsequently, Societies for the Prevention of Cruelty to Children rapidly came into existence. The link between violence to children and violence to animals has been studied ever since.